Only just got Portage and now being dropped ...

[proudmum74]

Hi - we live on the border of 2 counties so despite getting a referral at birth from the hospital we had to wait over 8 months (and almost daily phone calls from me) for the 2 councils to argue it out as to who was responsible for providing dd portage care. For the past 2 months we've had a really lovely portage lady visit every 2 weeks & the progress dd has made during this time has been fantastic.

I'm therefore gutted that today her portage worker announced that she was really sorry, but because my dd is going into nursery part-time in 6 weeks they have to stop their service. She seemed genuinely upset about it, as she knows how well dd is responding to this input and she wants to keep on seeing her. She also mentioned that the cross border issue is starting to rear its head again, as the 2 councils are now arguing about who will provide her pre-school support (neither want to do it).

It's even more disappointing because when we finally starting to get their input 2 months ago I raised my concern about how I was going back to work in March and whether it was worth Portage or should we go straight to pre-school care & they promised me that Portage was the right move & we could keep this service until school age (with me acting as the bridge between her various suuport providers)to make up for the fact they had messed up so much initially and taken so long to sort out dd support.

Has anyone else been in this situation & what can I do to make sure that she still gets some support whilst they start the arguing between councils again?

Thanks

yep, we were in a similar position in that we waited 6 months to get to the top of the list to be told due to staff shortages there'd be an even longer wait. I think we had about 4 months of portage in the end before dd3 started preschool and it all stopped.

Portage is supposed to continue until school but I think due to funding a lot of areas stop when the dcs go to preschool. You could try asking a supportive paed if they'd put in a word with portage but I think the key would be to sort out the wrangling over who is going to support her at preschool. If you have a good preschool with good support you can build a lot of portage style stuff into her time there.

should have said when dd3 went to preschool, portage did a hand over and wrote a really good iep for her that they could use.

goodness dont these people put us in stressful horrible situations they seem to forget a REAL child not just a statistics involved,ive not been in this situation before whats your ward perhaps if they all are not listening you can get in touch with your local councillor orlocal mp for yr area ive just had to do this and miraculously there now listening n moving faster .good luck

Hello.
I thought the idea was that portage stopped once the child was at preschool more than 2-3 times a week with the idea behind that bein once they were around 3 and had a statement in place to guide their learning according to their individual needs.
On that basis going to nursery / preschool for childcare purposes at the age of 9 months is irrelevant and should have no impact on the portage provision. My son goes to a childminder 4 days a week and still gets portage, which will stop when he starts preschool. So I would be arguing that until your dd has a statement supporting her development you expect the portage to continue to aid her development.

I would put this in writing to you dd's consultant and GP and also state the the behaviour of the 2 councils is causing you considerable anxiety about your dd' health and welfare and that you want roles and responsibilties clarified in writing asap. If your dd has a social worker I would be expecting her/him to be sorting this and would putting that inwriting too!

Hello.
I thought the idea was that portage stopped once the child was at preschool more than 2-3 times a week with the idea behind that bein once they were around 3 and had a statement in place to guide their learning according to their individual needs.
On that basis going to nursery / preschool for childcare purposes at the age of 9 months is irrelevant and should have no impact on the portage provision. My son goes to a childminder 4 days a week and still gets portage, which will stop when he starts preschool. So I would be arguing that until your dd has a statement supporting her development you expect the portage to continue to aid her development.

I would put this in writing to you dd's consultant and GP and also state the the behaviour of the 2 councils is causing you considerable anxiety about your dd' health and welfare and that you want roles and responsibilties clarified in writing asap. If your dd has a social worker I would be expecting her/him to be sorting this and would putting that inwriting too!

Yep, got to admit I'm a little confused as to why she is being dropped as she'll only be in nursery 3 days a week & the nursery have said that they're used to having Portage come in and visit, so I'm sensing that this is a budget cutting exercise!

I have a meeting with the head of portage scheduled to voice my concerns and after the mess they made of setting up her care initially I've already warned them that I'm not leaving the meeting until a confirmed plan of transistion is in place with all parties agreeing to it.

What support will the 1:1 get? What training do they have. Will any outreach services be coming in. Until you have sorted regular outreach etc insist on portage. In our area children go from weekly portage to termly outreach teacher which is disastrous.
You can always complain to councils and then go to local Govt ombudsman if they keep messing you around

my ds in pre-school 3 sessions a week, but because he is getting less than his funded 15 hours then his portage continues.... although they have just cut the 'overlap' cover for when he starts school, (they used to get a visit amonth for the first 6 months in school to ensure good hand over.)

Have to say portage, (tho we had to wait for it.) has been brill.

Ds was also dropped by the service (like a hot potato) when he started pre-school for 2 hours/morning 4 days/week.
But they did help the pre-school sort out a grant to cover his full-time 1:1 and found a chair for him so he could sit at the tables there (so only had to buy the accessories, rather than paying for a chair too) since NHS and LEA would not help. (Whilst also telling everyone he couldn't start until this was sorted. Wasn't impressed as he was only in it for a short amount of time each time he was there.)
Could you do with their help on any of this?
They also organised a meeting with the pre-school as a hand-over with his 1:1 to describe ds and what he needed. (Though I sat in on his first session and had a chat with his 1:1 each time I dropped him off.)
They also insisted the pre-school set aside a quiet area for him to chill out in. (Ds would hated it - as I knew he would - and had none of it and pre-school had to have another meeting a few weeks in to ask for permission to remove it.)
So overall I guess I'm saying they can get things done for your dd if you need them doing. Just accept you might not have the POV!
Have to say, though, that portage didn't make any big difference to ds. It was a more a break for me / something nice to do.

I think the rules have remained the same then from when my younger son had portage about 10 yrs ago. It stopped as soon as he went to SEN nursery part time.
I suppose they feel that the nursery will take over their role to an extent and if they have lots of children who get nothing they will prioritise them over a child who does get some input from nursery.
It's a shame you had it for such a short time though. My son had it for quite some time and really progressed. Started with not being able to put a toy brick in a biscuit tin to being able to put simple shapes in the correct shape hole.

Who do you pay your council tax to? They should be funding it. Did you sign a contract at the beginning - that should set out when it wou,d stop.

We pay our council tax to the county who are providing POrtage services. We didn't have a contract as such, but we did have a development plan & it that it clearly states that Amy will continue to receive Portage once she starts nursery part time & I would act as the bridge between the nursery (in the same way that I currently do between the PT, OT, SALT, her consultants and Portage who don't speak to one another as they're in different counties or in some cases different floors of the same building!)

I sent an email stating my concerns to the head of Portage yesterday when we first found out about this & I've just received a one line email saying "thanks for your email, we'll get back to you when it is resolved". Not particularly reassuring as this is the line they used constantly for the inital 8.5 months when I was contacting them a couple of times a week to get the service started.

what sort of joint meetings do you have? we have child development team meetings ( albeit not very frequently) - have you got one coming up that you can stress your concerns about the portage stopping?

I would still be going down the route of this is what they promised, nothing has changed from what was originally agreed and if the portage is going to stop what is the paediatrician / social worker / SAlT etc going to put in place at the nursery as a replacement?

How old is your dd now? it sounds like you have started young in the relentless pursuit of trying to make the system work!

She's only 10 months old. We've been getting the therapists (joint OT, PT & SALT meetings) and a paediatrican since birth (as dd has down's).

I tried lobbying the therapists / consultants when we were initially trying to get Portage to provide the support they were supposed to, but unfortunately they all seem to think Portage is a bit of a waste of time & told me not to worry about the fact we weren't getting any support. I think this is probably because the Portage team seem to operate in isolation which annoys the other support teams.

The thing that frustrates me the most is that the therapists suggested we should consider sending dd part-time to nursery (as dd is an only child and she responds well to watching other children) which is why I enrolled her in the first place...

I thought I recognised you! my ds has ds too and I remember you from some other thread.

I am in the camp of thinking portage is great - because we have a great portage worker but I know it can be hit and miss depending on who you have and where you live.

I would be telling them that if they are planning to each visit the nursery on a regular basis to provide specialist input to the staff there on helping your dd develop then fine. if not they should start backing you and supporting the continuation of the portage.

I know some professionals also think there is no point starting input until the child is 1 but we had portage like you from 7 months and I think it has made a massive difference starting that young - not least in helping me learn how to help my ds develop. Stick to your guns on this and start talking about writing to the councillor / director of social services / MP and anyone else you can think of.

Thanks FnD, I think you're right - our portage lady is lovely & dd really responds to her. Plus, as you say, the targets they set are really helpful as a guideline of what is achievable... So it looks like I'm back to stalking our council / PCT again!

It was good speaking to you again btw!

We got Portage from around 2 years after waiting ages.. It didn't stop when dd started nursery.She was going 3 mornings a week but we had portage until she started school in September. It was invaluable. Here it is funded by Education and seems valued by everyone.. We had a lovely lady who was fab and I cried when we had our last session.. I would be complaining about this lack of service especially as there was such a delay in starting.. Good luck.